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Study on BLAs find steroid source


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Endogenous corticosteroid biosynthesis in subjects after bilateral adrenalectomy

 

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Very small amount of subjects - 10 but still... summary was interesting... I wonder what the significant levels are....

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Couldn't open it Jen. Probably my own computers inadequacy. Sounds interesting actually. Is this written like a horror story (The Cushing's That Would Never Go Away) or is it something that is encouraging (Relief from Lifelong Replacement Therapy)?

 

den

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Thanks Ami... I don't know why my link did not work

http://www.ingentaconnect.com/content/bsc/...000005/art00009

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Thanks, Jen, for posting. I recently saw an endo for surgery sign-off and the first thing she said is: "Are you sure you don't have an extopic source?". She was referencing that recently I look more cushingnoid than before. UGH!

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I have a question....I had a BLA in March 2005...I had a bunch of blood drawn at 5pm last thursday and cortisol and ACTH was included in tests. My ACTH was 15 and Cortisol was 3.85. I take 5mg of Predisone at 8am in the morning. Does the Cortisol result mean anything? I thought with a BLA and taking predisone cortisol is supposed to be undectable...like all my other cortisol blood draws it has always been <1 or undectable. Should I be worried? I gained 12 pounds this month after being at a steady weight for months and watch what I eat....and my brother says to me last night.." your face looks good..not as boney and a little puffy....past 3 weeks..sooooo much energy and the worst...my hump is noticable a little bit. :)

 

 

Jen

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Hi Jen...

Pred is NOT undetectible. Dexamethisone is what is taken for testing when it is needed to be undetected hence that is what is used in the suppression tests. Pred is very long lasting and not a usual choice for replacement as it is not similar to what the body makes but used by those, from what I see on addison boards, that are more prone to using up cortisol and need stability.

Did you recently change HC replacements?

At least your ACTH is nice and low - and with ectopic, that would normally be sky high. Perhaps you need to be tested again.

 

Sorry to hear that Susan... I have never lost my hump or belly... still waiting. I wonder when we do lose the cushy look.

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wow - I am stunned. Thanks Jen.

 

I might just be paranoid - but I have never felt in my "gut" that I was completely healed. And lately with all the stress I have been under I would have expected a crash. Between work and my mom being in the hospital for a month and then passing away. I only took extra Cortef 3 days - because my husband wanted me to. and I took Xanax with it - which probably canceled it out.

 

I take 20mg of Cortef in the am - that is all. When I do take extra I only take 5 or 10 - not the recommended stress dose of 30.

 

I haven't slept a normal night in months, I've gained 25 lbs in the last 3 months (I attributed it to my stress eating)

I have acne on my body - not face. My hands and feet are swelling. Headaches are back full force.I'm starving all the time.

For a year, everything seemed so normal. I don't get it. But I really believe Cushings is working in my body again.

Supppose I have ignored all this with my mom being sick - but now I am up all night thinking about it.

 

My Endo here is wonderful - but I questioned her about 6 months ago that I wasn't sure I was cured and she said you HAVE to be - you have no adrenals and besides you've lost 70 lbs , you look great.

 

I will revisit this with her, but in the mean time I am cutting back my Cortef to see what happens. I've cut down to 15 the past few days and felt no different. If it continues, I will cut to 10 and see how it goes.

 

It just boggles the mind - I felt so great for a year and the slowly things have started to happen. Haven't really wanted to admit to it I guess.

 

And I am hoping so bad that I am wrong - maybe it is something else that is off with me right now.

Will have some labs soon.

 

Denise

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Hi all,

 

Jen, I briefly toof hydro but found out that I was allergic to the bnding of the pill. Been on Predisone for 1 1/2 years now. With Predisone all my other cortisol tests were undetectable, so seeing a number freaked me out a bit.

 

 

Jen

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